Saturday, February 29th is Rare Disease Day. “The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.”
I became ill in July 2010 but wasn’t diagnosed with Undifferentiated Connective Tissue Disease until November 2011. When my rheumatologist finally put a name to my symptoms, he told me UCTD is rare and that if I wanted to walk around and call it “the Kennar,” I could.
At the time, I joked with my doctor, telling him I had always “dared to be different,” so why should this be any different.
But since that morning, I’ve changed my mind.
I don’t want a rare condition most people have never heard of. I’d much rather live with a more common, even ordinary, chronic medical condition.
A disease doctors understand and can easily treat.
Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.
“Above all, be the heroine of your life, not the victim.”
– Nora Ephron
I am trying very hard to be the heroine of my life.
In the beginning of this medical odyssey (which began almost ten years ago), no one knew what was going on inside my body. Which meant no one knew how to help.
I did everything every doctor suggested. Went to every appointment. Met with every specialist I was sent to. Did every test doctors recommended.
For my readers who don’t know, I first became ill in July 2010. I didn’t receive my diagnosis until November 2011. During that time, I met with a neurologist, geneticist, rheumatologist, vascular surgeon, and ophthalmologist (did you know certain cancers reveal themselves through your eyes?).
Back then, I automatically said yes to everything. My body felt out of my control. I was scared. My son wastwo years old when I became sick. I needed answers, and I needed help.
Now, almost ten years later, I know I’m dealing with a chronic illness, and nothing fatal (thank goodness), and I’m not so quick to readily agree to a doctor’s “recommendation.” I probe for further information. I email my doctor and ask for clarification on something he said during my appointment. And I ask a lot of questions.
Why are you recommending this procedure?
What are you looking for?
What are the side-effects?
I didn’t “do” anything to get sick. And there’s really nothing I can do to make it go completely away.
In that sense, I am a victim.
But, I can exercise some control over how I choose to live with my autoimmune disease. Which means asking questions, taking my time to make a decision about a procedure, and gathering as much information as I can.
And apparently, from a medical standpoint, I’m still weird.
Here’s the thing. I’ve said it before, I’ve written it before, and I’ll write it again – I’m okay with being weird. I know a lot of people think it’s weird I like to eat leftover Thanksgiving turkey cold and dipped in ketchup. Maybe it’s weird that I always have to sleep with blankets covering me. Some might find the nine rings I wear to be weird.
Weird can be good. Weird can be unique. And special. And celebrated. It tells the world I don’t need to be like everyone else.
Except – when it comes to medicine.
I’m going through a rough time right now. Actually, for the last several months. My rheumatologist referred me to a neurologist in his office. I’ve had two different (unpleasant) tests/procedures.
One test revealed “muscles abnormalities.” Abnormalities – just a fancy word for weird.
The other test supported the findings of the first test.
But when my rheumatologist walked into the exam room the other day for my follow-up, he told me he had met with the neurologist, reviewed the findings, and in his words, “She says you’re weird.”
“I’ve heard that before,” I replied.
But inside I didn’t say that. In my imagination, a whole other scenario played out. I got off the exam table and started screaming at everyone.
“Don’t call me weird,” I hollered, enunciating each word.
“Tell me you don’t know what to do. Tell me you don’t know how to help me. But do not f – – -ing call me weird. It’s not me that’s weird. It’s this disease.”
I had images of me standing outside on Wilshire Boulevard, using a baseball bat to whack the street signs.
The police officers would come. I would admit all my wrongdoing. Take full responsibility. And tell the officers that I was just overcome with emotion. I had been called weird once too many.
Because when my doctor told me I was weird, I knew we didn’t have any more answers. I knew I wasn’t going home with a new treatment plan.
I live with pain. Each and every day.
Pain isn’t weird. Pain is exhausting. Pain is depressing. Pain is want-to-pull-the-hair-out-of-my-head upsetting. But it’s not weird.
There were so many parts of Mary Laura Philpott’s collection of essays, I Miss You When I Blink, that felt like she wasn’t writing about her life, but mine.
That’s part of what makes a good book. You get lost in the story. Whether it’s fiction or non-fiction. Whether it’s based in the past or the present, or even the future.
And I got lost in this story. I saw myself on page after page. At times it was unsettling. At times it was reassuring.
“When you internalize what you believe to be someone else’s opinion of you, it becomes your opinion of you.”
“If you’re twenty-three and twenty-one and you tell me you’ve just gotten engaged, I will tell you that you’re insane and too young, because when I look at twenty-one- and twenty-three-year-olds now, they look like babies. But at the time, when I was twenty-one, I could not foresee any reason not to marry him. I pictured the timeline of my life ahead of me – inasmuch as a twenty-one-year-old can look at her future life, which is to say in hazy, imaginary terms – and saw no circumstance in which I’d want not to be married to him.”
(Side note to my readers – when my husband and I were married, he had just turned 23, I was a few weeks shy of turning 23.)
“I felt like vapor in need of a shape to contain me. Who was I if I wasn’t that person busy with a hundred tasks and a dozen phone calls to return every day? Who was I if no one needed me to make their lunch anymore? And what good was I – what quantifiable measurement could be there of my worth – without these value systems to calculate it? These questions didn’t excite me. They terrified me.”
“That’s one of the strange things about life: Even when we know how much worse it could be, everyday pains are still pains.”
“But one person’s more-sad doesn’t cancel out another person’s less-sad. The fact that an earthquake took out a whole city block doesn’t make it hurt less when you trip and snap your ankle.”
“You wish you could take a break from carrying everything. It’s all so heavy. You are so fucking tired.”
“What I can say is that my early forties are ticking by at an alarming rate. The idea of making my days count makes me feel like I’m not wasting them.”
“Children hold you accountable on their own. They keep a tally, and they remind you. There’s no dodging these little accountability officers. They report for duty – and report on my duties – every day.”
“But maybe the trick isn’t sticking everything out. The trick is quitting the right thing at the right time. The trick is understanding that saying, ‘No, thank you’ to something you’re expected to accept isn’t failure. It’s a whole other level of success.”